Hospital journal
December 8th
This is my hospital journal
You have been actively dying for almost ten hours.
I never imagined it would be this slow. I checked Chat GPT to find out what's happening to your body. It is the slowest shutdown ever.
Heart rate is all over the place. O2 is up, down, way down, now back up. 40%?
Your breaths are almost ten seconds apart. The death rattle is ever-present. It sounds exactly like when you needed to cough to get your stats up, only now you have lost the ability to swallow.
Your body is shutting down. I don't know the order, but I know the heart is the last thing to go.
I have such a sense of gratitude for being your mother. So challenging, painful, and genuine. It is impossible for me to pretend to be anyone but myself because of you. These nineteen years have stripped me of pretenses, superficial relationships, and my expectations of who I was supposed to be. You forced me to love before anything else. I loved you through my shame, my fear, and my
doubts. I had to keep going for you.
Under the covers was a place I could no longer visit. I was present for all of it. The heartache of diagnosis, the fear of judgement from strangers, the exhaustionof not having a life where I could dictate the terms and make the plans.
Spontaneity was my new journey. "Now what?" was my mantra.
So many disappointments, over and over. Things had to be cancelled or done the hard way. I came along for all of this, kicking and screaming.
The pain of transformation molded me into the woman I always thought I could be. Kind, compassionate, responsible, brave, vulnerable-so vulnerable. It felt like I was walking around with an open wound for years.
Slowly, being your mom made me see what sacrifice looked like. I was second. I had to nurse my inner child through the fear, then later the inner teenager who still wants to fight to protect every injustice ever done. I would allow her tolash out more than I wanted, but I have no regrets. The shitty music teacher who excluded Dermot from the class, the countless assholes who decide it's okay to park in the disabled spot, the school administrator who tried to take away your nursing benefits without my input. That teenager saved me for a while, until she didn't. She would yell at the wrong person, expect things from people that weren't capable of giving, put fear before love, and told me not to ask for help.
Back to now. My other boys are alone. I am helpless. I offered them different people, that's all I can do. They are feeling your imminent loss. The void will be insurmountable and life-changing. I ache for their hearts. The tragedy is unfair, and yet everyone will suffer loss at some point. They are strong, smart, compassionate young men. You helped shape them and steer their future. I honor your existence. I will forever be changed and in awe of your quiet strength. Your will to live makes me a better mother. No excuses are good enough, not to show up and love you with everything I have to give you.
I am depleted. Running on two hours of sleep and full of sorrow, I'm afraid of what the next step looks like. Who will I be without you? How will I ensure you are remembered?
The timeline is uncertain, but I excel at uncertainty, so I WILL KEEP SHOWING UP for this life. I will ask "now what? " every morning. My body will release all the cortisol I've built up. I will use my friends to lift me up when I need help. I will continue to see God's gifts everywhere, every day. I will think of you, my heart will hurt, and I will smile when I think of all the people you touched.
I am waiting for you to die. I am counting the seconds between breaths. Six seconds, ten seconds, three seconds, eleven seconds.
I want this to be over, but I don't want it to end. Heart rate 137, O2 level 52, Eight seconds.
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